Please share your experiences with Xeljanz on the comments page here. Patient stories are starting to come in across the blog and I thought this would be more convenient for others searching for answers. Here’s my story.

In December, I saw Dr. Tylenol and asked again about tofacitinib, now Xeljanz. Katie Beth and I knew a lot more about it after three years at ACR meetings, but we didn’t let on. It was agreed a prescription would be set up through the office person who handles that. A couple weeks later, a lovely pharmacist called to inform me that my prescription was approved with no special preauthorization required. Her pharmacy would also accept the copay card from Xeljanz so that my cost would be FOUR dollars, after insurance.

Of course I know about copay cards and recommend such programs to patients all the time. But this was the first time I’d succeeded in getting one accepted for payment! Pfizer and this pharmacist certainly made it easy, but perhaps it was also simpler because tofacitinib is in tablet form, not infusion.

Free samples of Xeljanz

Several patients in our community have reported receiving free sample packs of Xeljanz through their rheumatologists. The pharmacist told me that sample packages contain two weeks of doses of tofacitinib tablets. Some doctors are giving patients two sample packages, which means a patient tries the new drug for a month free.

A bottle of tofacitinib tablets

New Year’s Eve, the Xeljanz arrived by the same FedEx guy who has brought me Redskin tickets several times. We chatted about RG3 (Robert Griffin III, our quarterback). When Katie Beth got home, she opened the box and took pictures of the loot. Then I put the bottle away until my vaccination waiting time ended. Today is four weeks since my shingles vaccine. So after my blood tests and pneumonia shot today, it will be time to find out. I’m nervous the same as with any new medication. But I’m also hopeful that this will finally be my opportunity for some relief.

I don’t want to talk about it, but it’s the truth

Daily low-grade fevers. A jaw that won’t open for a few days so it’s difficult to eat or talk. A neck flaring so badly I can’t hold up my head. This is how it’s been for almost seven years. If I walk very far, the usage principle kicks in so that I can’t walk at all. My abilities are restricted by the disease because there is always some unexplained “sprained ankle” (“flare”) in an ankle, knee, shoulder, wrist… anywhere. Never a “normal” day. A day of less pain means I decided to rest, work sitting still, and take needed pain meds.

It always surprises me when a friend asks me anything that sounds like “Are you better yet?” Although I season it with optimism and allow God to use it for good, in many ways the past few years have been HELL. Having lived almost seven years this way, with abilities restricted and constant joint pain, I try not to complain. But when I improve, I will certainly say so. Out loud.

Please share your Xeljanz experiences in the comments box so other readers can benefit.

Here’s what one patient posted recently:

Hi Kelly. Please let us know asap how you find the new treatment Xeljanz. I am still on Cortisone, Celebrex, and methotrexate, which does not still the pain for one moment. Maybe you just find the utopia (in the Rheumatoid Disease world).

What do you think?

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